it was there all along

Way back in January—and, gods, doesn’t that feel like a decade ago?—I was out in the neighborhood on my regular morning hike and was being kept company by the “Bodies” podcast. I’d not listened to this podcast before, but this episode called “Anxious Messsounded promising. Anxiety is part of living with dysautonomia and I was hoping for some new ideas on how to handle it.

I wasn’t at all prepared for how those thirty-four minutes of audio would change my life.

When Reese Piper, the young woman at the center of this episode, learned that she has Autism Spectrum Disorder (ASD), I was both surprised and a little disappointed. I was surprised because I hadn’t known that autism can show up in girls and women rather differently than it does in boys and men. Autism wouldn’t have entered my mind at all for Piper as she sought to discover why she was struggling in the world. And I was disappointed because I also immediately thought, “Well, this is interesting, but it doesn’t apply to me.”

But I kept listening, and I kept learning, and then I started to wonder. Was it possible? Could this be me? Back at my desk, I searched for articles on autism in adult women, and I started seeing my own challenges and experiences being described. A pattern was emerging, and I felt the world shifting sideways.

Because it was me. My situation is different than Reese’s, and the way ASD manifests in me isn’t identical to hers. But after digging into published literature, poring over first-hand accounts, and engaging in a significant amount of personal reflection, there was simply no doubt that I’m on the spectrum.

I have Asperger’s/ASD. I am autistic, and I have been all along.

My doctor didn’t even blink when I brought up this possibility. She asked what led me to consider autism, then nodded as I replied and recommended that I speak with a mental health professional. I’d started seeing a new counselor a couple of weeks earlier, and I showed her the results of the self-assessments I’d taken, all of which supported ASD. As luck would have it, this counselor has autism in her family and she confirmed my suspicions.

Trying to arrange for a clinical assessment and diagnosis has been complicated by my age, by insurance, and by the pandemic, and it’s not really necessary unless I’m looking to back up an ADA accommodation claim with an employer, for instance. Mostly, I’m focused on learning about and experimenting with the best tools, techniques, and approaches to live a happier and healthier life.

This is not bad news, but it has been and continues to be a lot to digest. In many ways, this is a massive relief. Asperger’s explains so very much about my life up to this point—for instance, why I was able to excel in academic environments with rigid structures but why I’ve floundered pretty much everywhere else. This is the reason I have always been so “different” and “strange.” This is the reason I’ve been perceived as difficult or non-conforming, and why I have never been able to fit in. Why friendships and relationships have always been a challenge, and why I’ve often chosen the company of animals over people. Why I have zero fashion sense and can’t keep a tidy house. Why I get stressed when plans change or when spontaneity is required. Why I can be graceful and magnetic when dancing on stage, but am otherwise a klutz. Why I’ve always been adversely impacted by external stimuli (e.g., sound, light, smells) and why I’ve struggled mightily with executive function in some environments but not in others. And probably why I can’t stand mushrooms, too—it’s a texture thing. And so on.

ASD doesn’t take the place of dysautonomia or the daily headache/migraine; there’s a curious overlap of symptoms between dysautonomia and ASD (though I still have exclusive symptoms of both) and people on the spectrum may be more likely to experience headaches and migraines. I still have chronic illness and chronic pain; now I also know that I’m not neurotypical. There is no cure for autism, only management.

This is something I’ve been revealing to the people in my life rather slowly. For those who know me best in my life now, the revelation was basically a non-event. Not even my partner of twelve years was surprised. Some have sent messages of supportive curiosity. Others have pushed back to challenge the diagnosis, have advised me “not to advertise” my neurodiversity, or have simply not responded.

I can’t say that my unfolding and deepening understanding has improved my relationships with others. I was already an introvert, and I began to retreat more from the world from January onward as I learned more about ASD—and the pandemic has reinforced that withdrawal. There have been some key revelations about the dynamics between me and my partner, and for the most part this has been positive. But the biggest change has been in my relationship with myself. After decades of real pain, I understand so much more about myself and my life experience up to this point. I am gentler and more compassionate with myself now, with so much judgment and self-criticism removed—those burdens haven’t been completely eliminated, but it’s easier to move past them now.

It’s distressing to read about the high rates of unemployment and underemployment among people with ASD, and how ASD women are more likely to struggle financially, suffer with poor health, and be socially isolated and alone—I tick most of those boxes without breaking a sweat. It’s reassuring to understand that I’m not a fuck-up or a failure, but I’m still trying to figure out how I might build a more robust foundation for myself in this second half of life. I remain hopeful. We’ll see what happens.

The main takeaway is this: I am not broken. I’m not even bent. I’m just different. This simple truth has shaken me to my core in a profound and meaningful way. And the journey continues.

Posted in thoughts from the spiral.

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